Helping families after discharge from the Paediatric Intensive Care Unit

Discharge from PICU to the Ward

There are of course many reasons for a PICU admission, and many medical consequences. Usually a child is admitted to PICU as an emergency or after major surgery, which must have been extremely stressful.

Once a child has recovered enough to no longer need the level of specialist support that they have been receiving in PICU, they are ready to go to the ward before they are discharged home. This is good news but causes most parents to be anxious. This in itself can be a difficult transition.

How can we minimise the stress associated with transfer from PICU to a general paediatric ward?

1. If possible, try to become involved in your child’s Discharge Care Plan. Find out the transfer plans in advance if you can, such as approximately what time of day your child will be transferred, what the name and phone number of the ward will be and where it is.
2. There will be less staff on the general ward but remember this is because your child does not now require such close supervision and has been assessed as not needing intensive care or high dependency care.
3. Remind yourself that the transfer from PICU is a positive change. There may be some clear advantages to being on a general ward – for instance your child may not need to be attached to monitors, you may be able to get more involved in your child’s care, you may have access to a playroom or classroom together, or the visiting hours may be different and you may be able to stay next to your child at night.

The next step after the general paediatric ward is usually discharge home.

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Discharge Home – Emotional and Behavioural Recovery in Children

These are some of the common reactions children experience after coming home from PICU:

• Being more clingy to parents, siblings or other adults
• Behaving like a younger child, for eg bed wetting or thumb sucking again
• Being afraid of the dark
• Changes in sleeping, including having upsetting dreams
• Changes in feeding/eating behaviour
• Being excessively restless, overactive or finding it difficult to stay focused (e.g. when playing)
• Complaints of headaches, tummy aches or other minor complaints

A child who has spent a lot of time in NICU will have suffered enormous disruptions to their routines and may not be sure where boundaries lie. Life will also have moved on; time will have passed (as it would if your child had not been ill) and what was an age-appropriate rule before admission may no longer be.

“Acting-up” in a previously obedient young child is a common reaction when a child has been through a difficult event.

These reactions are part of a normal stress response in children and should recover on their own after 3-6 months.

In children with developmental delay the same reactions are commonly seen, but they might be shown differently, depending on what was usual behaviour for the child before admission to PICU.

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What parents do to help?

It is important to let your child’s mind do the work of sorting out what they have been through, at their own pace.

After a trauma or upsetting experience, the mind naturally selects which memories to play over, and then moves on.

Do allow your child to think about what has happened.

Don’t insist that your child talks about their experience. But, when they are ready to, make sure you sit down and listen, and if they are old enough, ask them what they are feeling.  This is their mind’s way of naturally “processing” what has happened and trying to make sense of it.

Consider making a story or diary together. It can be useful to make a story of everything that happened before, during and after the PICU admission.

You could stick in photos or your child’s drawings. Doing this together might help to fill in some of the “blanks” for both of you.

Try to answer your child’s questions about what happened honestly and use the right language for their age if you can.

Some younger children might start play act their time of illness by playing with dolls or figures or drawing or painting it. This again is a normal reaction to an upsetting event and helps the child’s brain to make an understandable story out of what has happened to them. Do not be alarmed if this play appears repetitive.

In terms of helping your child with their behaviour, post NICU, remember that part of loving your child is giving them clear rules and limits to what is acceptable behaviour and what is not.

As with all parenting, good behaviour can be maximised by following the four simple steps known as “CICC”:

• Tell your child clearly exactly what the desired behaviour is, e.g. “I’d like you to put away your toys in the box now”.
• Immediately reward the desired behaviour by noticing it and giving an appropriate amount of praise.
• Only praise your child for that task if they have done it, so the reward is contingent on their behaviour.
• Be consistent and always notice good behaviour, follow-through the consequences you have told your child.

Research has shown that punishments are in general less effective than clear, well-timed rewards at changing and maintaining good behaviour.

It is usually a good idea to start parenting the way you mean to go on as soon as your child is discharged from PICU.

Of course, extra time together, cuddles and demonstrations of love are definitely part of good parenting!

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Being alone, or spending time with family & friends?

Some children might want to get back to their old routines of returning to nursery, pre-school or school, being with friends and extended family soon after discharge from PICU. Other children might need more time on their own than before.

Usually after a few weeks it is possible to gradually start to get back to their old lives, putting the experience in the past and feeling grateful that it is over.

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